SAVOUR EACH MOMENT
Family fundraising for Disney trip for daughter with rare medical condition
Krysta Chase, 20, who has rare health conditions and is developmentally delayed, plays with her doll, Olivia. Doctors have given Krysta about 10 years to live, and a fundraising campaign is underway to help her family make her next years as fun as possible.
Janelle and R.J. Chase want to make the most of their daughter’s remaining years.
Krysta is 20 years old, but developmentally, she’s about seven. All her life, she’s had chronic conditions that required travel to Edmonton hospitals with her mom, putting a financial strain on the family.
When she was a newborn, doctors warned that she might never leave the hospital. They were wrong.
“She wasn’t supposed to make it past five days old, and here she is, she’s 20,” Janelle Chase said with a little chuckle. “We’re just trying to live out her best life and have the best fun we can.”
Krysta was born with a rare combination of three conditions: hypoplastic left heart syndrome, mosaic Turner syndrome and an ISO chromosome.
When doctors told her parents that she has a failing heart and would be ineligible for a transplant, predicting she had about 10 years to live, they decided they would do just as they always have: treasure every moment with her.
In March, their friends launched an online fundraiser, “Help Krysta live her best life,” to help the Chases take a family trip and help cover some medical costs. Typically, the family spends time together at the lake, but if they can meet the $20,000 goal they could take Krysta and their two younger boys, Kolby and Kyler, to Disneyland to meet her favourite princess, Jasmine from the movie Aladdin, in person.
Chase said she’s “thankful for all the love and support” they’ve received for the fundraiser, which had collected $4,800 as of Friday.
Chase said she and her husband “knew deep down” that the day might come when doctors would give them the worst news they could imagine. Krysta has had 34 surgeries to date, three of which were open-heart surgeries that have made her pulmonary arteries too weak to handle the interference of a transplant, Chase said.
It’s a hard situation, but they focus on staying positive.
The Chases are a tight-knit family, and being at home during the pandemic has allowed them to spend more time together. They celebrated Krysta’s 20th birthday recently with a backyard barbecue. Later this month, they’re planning a lake trip. Krysta said she plans to “play on the beach” and she “might catch some fish, too.”
“Just don’t throw your rod in this time,” her mom teased.